Wednesday, April 10, 2013

Finding the Threads of Strength: Supporting a Sibling With Mental Illness

By Molly H. Wilson, NAMI Montgomery County (Pa.)

Recently my family experienced a miracle. Not the type of miracle that draws massive crowds or gets noted in history books, but a miraculous experience that we never believed possible. Tucked in a remote area of New England, overlooking the rocky coast, we witnessed my younger brother exchange vows with his wife. I can’t say whether it was the crisp ocean breeze or nearly a decade of tumultuous emotions being released from the internal box I have worked so hard to contain, but I have never felt such a powerful mixture of relief and joy. Part of this was a result of watching my parents, sisters and brothers; the collective awe of living a moment we once thought impossible. Mostly it was pride and joy for my brother, as he had found a trusted companion, a true love, someone who was excited to spend the rest of her life with him—despite his mental illness.

In 2003, my brother was in his early 20s and living on the west coast. He started to exhibit signs of delusions. Over the course of a few weeks, telephone conversations became more bizarre and it became obvious that something was happening to him. The speed at which he deteriorated was alarming, and my parents soon flew him back home to get a better idea of what was happening. Was it drugs? Was it alcohol? Was he sick? We had so many questions and fear started to saturate our thoughts.

He came to stay at my house the night he arrived. Opening the door to greet him is a moment that plays in my memory over and over again. Normally, my brother is tall—striking in fact—and has a truly contagious smile, but in that moment, he was hard, rigid and closed-off. He wore the black hooded sweatshirt—with the hood up to cover most of his face—that would become a constant part of his identity in the coming months. He seemed shorter, defeated and, most of all, scared. I reached out to hug him and was met with resistance, he wouldn’t make eye contact and barely said hello. I remember feeling a deep sadness. This is not the brother I once knew. What happened to him? What did he do to bring this on? This one moment, the simple act of opening the door and greeting my brother, for me represents the threshold of crossing into a world of a family member affected by mental illness.

The next few years were about survival, not only for my brother, but for my family. He was eventually diagnosed with paranoid schizophrenia. He struggled to interact with people, finding it difficult to even go into a store to buy a cup of coffee. He couldn’t make eye contact and conversations were brutally short. He continued to bounce around trying to find quality medical care. Our family struggled to be supportive, understand which behaviors were results of his illness and which ones were not. He repeatedly went off his medication and had episodes—or psychotic “breaks”—until he came to terms with the fact that he would need to take some form of medication for the rest of his life. It was a dark time.

When my brother and I were young, people used to think we were twins. I loved being told this, because it reassured me that we had a special bond. His experience with mental illness has impacted me on so many levels, but mostly I felt like I had lost a sibling because this bond was broken. He barely talked to me and didn’t return phone calls. In all of my research, I found lots of support and guidance for parents of children with mental illness, but struggled to find support for the siblings, particularly, adult siblings. Unlike my parents, I wasn’t invited to doctor’s appointments or responsible for ensuring his basic needs were met. This at least gave them some direction and steps they could take. I also struggled to talk to other people about it. In addition to worrying about protecting his privacy, I quickly found that most people didn’t know how to react to a personal conversation about mental illness and felt uncomfortable, which in turn, made me uncomfortable. How could I help? Without an answer, I just kept calling him, visiting him and sending him emails. I tried to be supportive and maintain as much of our “normal” sibling relationship as possible.

And then one day, years after that first melancholy greeting in my apartment, something was different. He smiled. He cracked a joke. He made eye contact. He was interacting with friends, and he talked about a girl he had met. The constant weight that was my new normal started to lift from my chest.

We haven’t found the cure. Certain struggles have become a part of the fabric of my brother’s life, and as a result, for all those that love and support him, but he has gained the tools to manage them and is thriving. In quiet moments, I have heard each of my parents and siblings mention the black sweatshirt my brother wore constantly those first few months. Looking back on it, I think it gave him comfort to hide beneath its threads. As we watched him get married, he stood tall with his head held high and no reason to hide. I have never been more proud of him or our family. In the darkest of moments, we refused to give up hope, demanded better treatment and in some situations, gave him the space to figure some of it out on his own. Not an easy feat for anyone, or any family, touched by mental illness.

My brother only wants to focus on the future, and rightfully so. When you have experienced such darkness, focusing on the present and looking to the future is the only way to live life. He is firmly grounded in reality, as is his support system, and we recognize that he will struggle again. He will always need to pay close attention to his mental and physical health to ensure he doesn't slip backward, and continue taking medication and seeking professional help. But for now, we will embrace the miracle our family has experienced. We will drink in all that we can of it, and live off its warmth and comfort for as long as possible. Because when you love someone who struggles with mental illness, that is all we can do: make the very most of the good moments and use them to build strength for the tough times ahead.

27 comments:

Anonymous
said...

Thank you for sharing this. I felt very emotional as I read your family's story because it's so similar to my family's journey with my brother's mental illness, except that we still struggle to convince my brother to seek the treatment he needs. I pray that your brother continues to do well and that you and his other loved ones keep finding the strenght you need to get through any tough times ahead.

This was a wonderful piece and thank you for sharing. We are in a dark time with my son. I have been very involved on many levels. I don't know where my son is now ad I am very concerned. Thank you for giving me some comfort today.

Thank you so much for your writing! Our 20-year-old son has schizoaffective disorder and just got out of the hospital after a three-week stay. Our 18-year-old has severe bipolar disorder, type 1. I worry about their younger sister, who just turned 15. She adores her big brothers and this has been really hard on her. When she is open to the idea, I am going to have her attend a NAMI Family-to-Family class, because she will have to cope with her brothers' illnesses her entire life.

Ditto with the other anonymous comments, this story resonates so strongly for me and my family. We are still in the "dark" time. Your story gives me hope and I pray daily for my son to come to "own" his condition and what he needs to do to maintain his mental health. This will be helpful for my younger son, who is struggling with how changed his brother is. Thank you!

What a great story about not giving up hope. My son also has schizophrenia and he just got married in September. We all, as a family, cherish the good moments because it does give you strenght for when it's needed the most. Great, beautiful words.

This touched me so much! My husband & I and our daughter are sharing a similar joy as my son just got engaged to a wonderful woman who loves him and recognizes all of his amazing talents & qualities.We are so blessed.Thanks for sharing!

Forgive me for being a "wet blanket", but the fairy tale ending you gave to your brother's story leaves me uneasy, and may give unrealistic ideas to some. Perhaps you didn't have space, but you make no mention of how prepared your brother's new wife is, for the inevitable extra stresses there are in a marriage with a seriously mentally ill spouse. Has she perhaps taken the NAMI Family to Family course? Has she seen your brother in a decompensated state, and been able to both keep herself safe as well as being strong enough to see him through these phases? Has the question of whether to have children been addressed? Will your brother have to be able to keep a job, or can the wife's income support them should he be unable to work steadily?

Love, especially a stable, committed relationship, can be a wonderful thing to anyone, maybe more so to a mentally ill person. But by not addressing in your article these realistic issues, you leave the impression that meds and marriage can cure mental illness, when it is far from the truth.

Cheers! Hoorah! I can only imagine the wonderful joy and relief you must be feeling. I can only offer a humble thank you for sharing your story, for it is yours as much as your brother's. Mental illness rips into the very soul of a family. It is a ray of hope when things go well.

I have been listening to Lucinda Williams' song "Are You Allright" all morning and wondering where my brother might be and how he might be doing. I kept thinking how much I would like to hug him and hold him tight and for the first time in years I logged on to the NAMI website for support. Your piece was the first I saw and it made me remember that I am not alone in missing my brother.. Thank you so much for sharing. You are a lucky sister.

Yes, positve family support increases recovery. May we all do what we can to bring others to the family support groups and the Family-to-Family class so they know how to become strong supports. Isolating is not helpful sharing your experiences and what helped and worked is,

Your story touched so many parts of our family's ongoing journey with my daughter's mental illness. I continue to remind her everyday of her strength in coping with her illness and trying to find the right combination of medicines/therapy/strategies to handle the ups and downs she faces. I know things will get better as they did for your brother with HOPE and perseverance. Thank you for sharing your story which was discovered by my daughter and inturn shared with our family:) This gives all of us a postive reason to push through the difficult times for brighter days ahead...particularly for my daughter and your brother!

thank you for sharing your story. I too am living in a very sad situation with my daughter. She is refusing to be helped as she feels there is nothing wrong with her. However, in February of this year she tried to kill herself with a gun. She survived when she shouldn't have. there is no logical reason why she survived except by the Grace of God. She has no brain injuries or spinal cord damages. Now we are waiting for facial surgeries. It is a long road. I didn't know I had the strength I do except that I have no other choice. I need to help save her.

Thank you for sharing; a joyful day indeed! I'm happy my brother continues to take actions to keep his mental health a top priority, but how wonderful would it be for him to experience a partner's love?! I hope our family can one day share in the happiness you have described.

I am passing this along to my daughter to read. She is also a young adult struggling with the loss of her brother to Schizophrenia and this would be very helpful for her.Thank you for sharing your story!!!

Thanks for sharing, this is a very well written article and it's great to know about the struggles that ensue while facing mental illness. I have a mental illness as well but I'm also able to see the flip side of the coin from one of my siblings/or parents' perspective. Mental illness affects everyone.

Thanks for sharing your story. I have one adult child who suffers from mental illness. My other 2 adult children have not supported their sibling during this 10 year torturous journey... I believe it is because the illness saddens them and they don't know how to handle him or what to say to him. I pray for a "miracle" such as yours as well as that my child will have insight to the illness that plagues his life. I also pray for a miracle of his siblings accepting and supporting him. Thanks again for this! Very Inspiring!

Thanks for sharing your story. Our son age 27 had first psychotic episide in June 2010. Diagnosed with paranoid Schizophrenia. For the next 21 months he stayed in a town 2 hours away from us without any treatment, addicted to pot and alcohol. He was found confused on a cold morning and We got a call.We brought him home on April 1st 2012 and ever since one of us stay with him 24/7. He has been living with us for 13 months and started college in January. I quit my job, he takes medication but still paranoid and delusional. I sit in the lobby while he attends the University. Finals next week. Hope for the best!

Thank you for your story...In seeking support as a caregiver of my daughter who is a single Mom, I sought out Nami today and came across your story.My daughter doesnt suffer from the same illness your brother has - she is recovering from a pyschotic break which was a result of extreme stress and her primary care dr telling her she could go off her lithium ( she is bipolar). The episode was so severe that she was arrested for stealing a car and went missing. Thankfully there were no charges filed because it was obvious to law enforcement that she didnt know who or where she was. I am still trying to.cope with the devestation she now feels from her community going into shock over her actions as well as the emotional blow to her self esteem. She is s mild tempered kind individual, who is trying to get her life back. She struggles daily now with huge fears and tears. Everyday is a struggle to cheer her on and its taking its toll on me & her children. I wish for joy to come again as it has for you. Thank you again.

I come from a family that has many different types of mental illness. Every year one of my brother's will go off his medication and have severe episodes. Usually, he finds himself incarserated due to stealing, seeking out one family member or friend. Here in Kentucky we have to either file a petition for him to be arrested and observed to see if he is in need of hospitalization. He knows how to fool anyone of authority. Even the jail at times will send him home because they will cannot take his behavior. When he is at his "normal self", he is still not the same brother, he use to be. I really miss him so much.